Mar 23, 2023
Social Worker Leans on Personal Experience to Provide Patients with Dedicated Support Systems and Connection
Credit/Permission: Terry Weaver
More than 10 years after receiving his kidney transplant, Terry continues enjoying life and finding fulfillment in helping others.

Every day, Terry Weaver brings to life DaVita’s focus on high-quality, empathetic and personalized care through how he supports and guides social workers.

A divisional lead social worker at DaVita, he’s been in social work for 10 years, but his calling started much earlier.

“I found out that I was a kidney patient at birth,” Terry explains.

Terry was born with one functioning kidney, and throughout his childhood he had persistent appointments with doctors, including his nephrologist. As doctors discussed Terry’s health and explained risk factors and symptoms to be aware of with his guardians, Terry’s experience focused more on understanding that his childhood was different from others.

“Why is my life so different right now?” Terry remembers asking himself. “I wasn’t an only child, but I definitely felt like I was because I had all of this isolated attention on me.”

As Terry transitioned from late childhood to adolescence, to young adulthood, he faced another challenge: better understanding his own health and being empowered to advocate for himself. It was through this process that he found support and resources that helped him—including a summer camp focused on giving kids with kidney disease the opportunity to step away from their day-to-day environments and receive education and training.

In his early 20s, Terry faced the next phase of his kidney journey, starting dialysis. When he was still in college, Terry learned his remaining kidney failed and he would need dialysis or transplantation to sustain life. Initially, he connected with a social worker who provided him very dedicated support. “She would spend time with me just to make sure I understood what care was being given, what expectations were and how [treatment] fit into this new normal in my life that was so different.”

When a move meant he no longer had the support of this social worker, he grappled with finding adequate investment in himself, his well-being, his quality of life, or his desire to pursue a transplant.

Leaning on his experiences learning to advocate for himself, Terry was able to seek resources to find the support he needed and knew he deserved. But the experience also translated into his calling: “I ended up deciding this was going to be my career path and that I would advocate for these patients because I’ve lived it. I’ve been around it my entire life. And we need the type of people that are going to fight for us.”

What it comes down to, Terry explains, is empathy.

“We will first meet them where they are and then we can understand and empathize with their story,” he says. “Even as a part of the community, my story is not everyone’s story. My story is not going to encourage everyone nor is it going to reach everyone. What I have to do is first come to the table and empathize wherever someone is currently standing and whatever their present state is.”

Terry thinks back to the social worker he worked with—the one who took the time to understand his needs as a college-aged, Black man who was experiencing kidney disease—as one of the examples of how he wants DaVita patients to experience the support network that a social worker helps build and maintain.

A Second Birthday

When Terry was receiving dialysis treatments, he considered seeking out a living donor for a kidney transplant but ultimately decided to focus on the national transplant waitlist, where transplanted organs come from deceased donors. The average wait time on the national waitlist is typically three to five years—Terry waited more than five years.

“It was not quick,” Terry says. “I think that’s where a lot of my empathy comes in for speaking with patients that are on the transplant waitlist. Sometimes you can get discouraged, and my support system did not let that happen to me.”

Throughout this time, Terry experienced a journey that his social worker team helps prepare patients for. After his initial evaluation and placement on the waitlist, he had to maintain his health.

One Saturday in September 2009, Terry headed to choir practice. He had received a call a bit earlier to prepare him—he was fifth in line for a kidney. But he had been in this same position before, fifth in line, and the follow-up call never came. So, he asked his choir to pray. Then practice started, during which members were encouraged to leave their phones alone and focus on being present with the group.

But Terry’s phone kept ringing.

"It was all worth it, and it continues to be worth it."

—Terry Weaver


Ultimately, Terry took the call and learned that the people ahead of him in the waitlist were unavailable or not ready for surgery: The kidney was his if he wanted it.

At first, Terry didn’t know what to do. From past calls he had received, he understood there were a variety of reasons why others might decline a kidney, but he also wouldn’t be able to know if the organ had tested positive for any other chronic illnesses until after he accepted it (at which point he could then decide not to go through with the surgery).

Grappling with the decision, Terry turned to his family, who gave him the best advice to make the decision that was right for him: “If you get the organ and nothing changes, at least you did it. And you already know what the outcome would be—you would go back to your center. To continue receiving treatment is not going to alter any of your dreams or alter any of your goals.”

They also agreed that the decision ultimately and always would be his; they could not choose for him. Equipped with this advice and support, Terry paced the parking lot—then hopped in his car to get his kidney.

“I celebrate it annually as a second birthday.”

A Long Journey

Recovery from kidney transplantation is different person-to-person, so it’s important patients considering transplantation talk with their physicians and transplant team to understand what the surgery entails and what that can mean for recovery.

For Terry, it was a long journey. The incision on his abdomen was larger than he anticipated, and the healing process made it difficult for him to walk for two months after the surgery.

Even despite the healing process, Terry still thinks his journey was worth it:

“It is worth the life that I’m living now and the way I’m able to help other patients and inform social workers—and make sure we’re selecting the right social workers for the job. It was all worth it, and it continues to be worth it.”

Terry now rises each morning with joy overflowing in his heart. His message to others with kidney disease is to keep the faith. “Miracles happen every day! You don’t need but one. I work each day to be for others what social workers once were for me—angels in disguise,” he says. “If you believe it, it can happen.”